Friday nights are tough at the Sandwich house. Baguette is exhausted from the long week. We’re tired. We’ve learned it’s a terrible night to go out to dinner, because Baguette is just not up for it, no matter what restaurant we pick.
So we usually wind up scrounging. I’ll eat a peanut butter and jelly sandwich (or two). Mr. Sandwich will eat hot dogs or a quesadilla.
But this one Friday? I was too tired for that. I said, “What do you think about ordering pizza?” So we did. And that was good. And it got me thinking.
What about making Friday Night Pizza a regular thing? Not ordering it–I don’t want to spend $25 on a pizza every week, and even interacting with a delivery person seems like too much at that point.
So we started making pizza. Not entirely from scratch–we buy the crusts, and after a few experiments have settled on Boboli–but I make sauce and Mr. Sandwich grates mozzarella and slices pepperoni. Maybe I’ll cut up some vegetables, maybe I won’t. Sometimes we make our own small pizzas; sometimes we split a larger one.
And now it’s become something I really look forward to. It’s not fancy at all, but it’s something we do together at the end of a long week. It’s cozy. It tastes good. It’s nice.
Resolutions are tricky. There are so many things I want to accomplish, and it’s so hard to narrow them down, and it’s so hard to finish anything. So I usually don’t make any.
For several years, I’ve been seeing people identify a “Word of the Year”–a word chosen to represent what they hope to do in the upcoming year. And I have not been able to get my head around it.
How do you pick one word? How do you know it’s the right one? What do you do with it? I don’t know.
And then, surprisingly, things started to click. We were taking dessert to a New Year’s Eve dinner, and I decided to buy a cake. Because New Year’s Eve! Cake! Definitely cake.
So I found my resolution: I’m going to eat more cake.
That’s metaphorical. I’m going to find more joy, do things that make me happy, look for the spark of positivity that is nearly always there.
And also it’s literal. Because cake.
So this morning, as I was listening to Meagan Francis and Sarah Powers talk about resolutions and words of the year on The Mom Hour, I realized that I have gotten my head around the idea, at least this time, and I know my 2019 Word of the Year.
Cake.
Yes, there are things I have to do, no matter what. There are needs and jobs and responsibilities, and those must be met. But whenever I can, I’m going to look at what’s being requested of me, and I’m going to ask myself two questions:
Is this cake?
Does this lead to cake?
And if the answer to either is “Yes,” then I will give it my all, or as much of my all as I can.
Often, though, that’s easier said than done. Because the other mask is needed so urgently, and so persistently, that it’s easy to forget that you even have one of your own, much less a need for it.
So people say “Oh, you and Mr. Sandwich need time together. You need to MAKE time. It’s important.” And we know. But it’s also hard in ways that they don’t understand, because they are thinking of their own situation.
When Baguette was a baby, family members could come over and take care of her for a few hours while we went to a movie or out to dinner. But after a very few years, that option no longer worked, for a variety of reasons. Sometimes her day care would have Friday evening babysitting. If she knew the teachers who were there that night, we’d plan to pick her up a couple of hours later than usual. She was with familiar people in a familiar setting–and she was already there, not getting dropped off–so it was comfortable for her.
We learned that she was delighted to stay longer at day care, but only until 8 p.m. That’s when she would start to realize that she hadn’t seen us in a very long time, and would start to get sad. Sad was not our goal.
So by the time we got home, and in the time before we needed to pick her up, it wasn’t really possible to see a movie. We generally would get takeout and watch things from the DVR. And that was fine, because it was time we were spending together as a couple. We don’t need to be in a restaurant or movie theater to do that.
But over time, the teachers she knew weren’t the ones providing extended hours. One of her teachers left the day care for another position and therefore was able to come to our house to babysit–but she soon moved home to her family, who lived out of state.
And then there was no one.
This is common, by the way. Finding babysitters was a snap when I was a kid, but apparently tweens and teens aren’t babysitting in those numbers any more, and there definitely has been pressure on parents to be more selective.
Finding a caregiver with experience with autistic children? We’re in a big city, and Care.com exists–but we’re easily talking $20 an hour, not counting dinner or the movie or whathaveyou. I don’t in any way think that’s unreasonable as a charge, but that’s a lot of money for an evening out. Plus, for Baguette to be comfortable with the person, we’d have to have them over at least weekly most of the time. It would add up fast.
Add to that the fact that Baguette developed the loudest, most piercing case of separation anxiety known to humanity, and we just weren’t willing to ask someone to deal with that.
But then there was “Hamilton.”
Colonial and revolutionary America is my era. I’ve studied it formally and informally most of my life, since visiting Colonial Williamsburg when I was six. And I love Broadway musicals. So when “Hamilton” was in its D.C. tryouts and a promotional video was released, I was instantly hooked. Everything about the production was incredible; the music, the backstory, the creators, the performers, the social media genius of Lin-Manuel Miranda, the #Ham4Ham mini-performances for people trying to get tickets by lottery. I got the soundtrack and listened to it for months during my commute. Mr. Sandwich got me the Hamiltome for Christmas, and I read the entire thing in a day and a half.
So here’s how this works. To get respite care–an aide in a day care program, or in your home–you have to be registered with the Regional Center. That process, with its forms and evaluations and assessments, takes more than half a year. We made it just in time for Baguette to get an aide to go with her to summer camp. And then when school started again, the director of the after-school program at her school refused to admit her. (This is a whole different post, and I don’t know if I want to write it at all, but I certainly don’t want to get into it right now.) We found ways to handle that, at great cost to ourselves (and mostly to Mr. Sandwich, who was the key player). We got another aide for summer. And then, at her new school, the after-school program was happy to admit her.
Once we got Baguette used to staying at school after the last bell, we focused on in-home respite. We were able to get the two women who were providing her after-school care, so they were known quantities to her. We had them over and did not leave, to get her used to having them in the house. We left for short trips, to the drug store or to buy groceries. And then the day came for us to see “Hamilton.”
Within 30 minutes of our departure, she had thrown her tablet across the room and shattered it.
You know what? The show was worth it.
Still, we went back to Square One. We stayed there for so many weekends that the aide told us to go out. We started, again, with short errands. And then the aide ghosted us, and we were back at Square One.
We’ve been through several aides, but Baguette is more accustomed to the idea of being home with someone who isn’t us. We usually have one at-home session and then go out for the second.
What this means is that we’ve had (nearly) weekly childcare for a year, and in that time we have been able to have lunch maybe half a dozen times.
Two weeks ago, we went out for dinner for Mr. Sandwich’s birthday. It was the first time we’d gone to a restaurant, just the two of us, in five or six years.
And last night we got to have dinner with friends. That? I don’t think we’ve done that since before Baguette was born.
We went to an area pub with Bestie’s parents. We ate delicious, bad-for-you food. I drank this Smithwick’s.
It, too, was delicious.
And you know what? We talked nonstop, but we didn’t talk about our kids the whole time.
It was incredible. It was rare. I had such a good time.
Her main food source is macaroni and cheese. Even then, she’s picky about consistency and texture. The need to provide portions that meet spec has led us to the microwaveable cup. Not the most economical form of mac and cheese delivery. Not the most environmentally friendly. But the one that works best.
Other items that come in and out of rotation are Trader Joe’s fruit and cereal bars, Goldfish crackers, Ritz Bits, Ritz crackers, crunchy snap peas, berries, watermelon, and yogurt. Yogurt’s actually been out of rotation for a long time.
One day, her teacher sent me a message to let me know that Baguette had asked for the school yogurt, but it wasn’t being served that day. So I set out to find some.
I failed.
Do you want to buy Danimals strawberry yogurt cups? WELL, GOOD LUCK DOING THAT IN LOS ANGELES.
I found an 8-pack of Yoplait yogurt. Half strawberry. Half blueberry. Possibly none of it acceptable. I sent a strawberry cup to school.
That’s my father’s saying. Mine is “It’s always something.”
Baguette’s IEP includes bus transportation between home and school. Because she is now able to attend the after-school program (this is a whole story of its own), she only rides the bus to school in the mornings; Mr. Sandwich picks her up in the afternoons.
At the beginning of the year, I called the Special Education department, which is where you’re supposed to call to let them know this.
Her bus comes at about 7:15 each morning, except for when it doesn’t–usually because there is a substitute bus driver, or because there is some sort of maintenance issue. Usually (but not always) we get a robocall about the latter.
Baguette, meanwhile, loves the riding the bus. She is ready ahead of time, can hear it 1/2 mile away (I am not exaggerating), and is almost frantic to get the front door to the house open when it pulls up.
Today, the bus did not arrive. We waited on the porch for almost 20 minutes. There was no robocall.
So I called the Area Bus Supervisor, who was not there, and left a voicemail. Then I called Dispatch, which required a lot of time on hold before I spoke to a person, and many more short times on hold while that person talked to other people before finally let me know that Baguette was not on the route sheet.
Which is weird, because she was on a route sheet YESTERDAY.
Then I got Baguette into the car and called Special Education, who confirmed that their records showed that she was to be picked up in the morning and said that her “profile is active,” but that they did not see any routing information.
And then I called the Area Bus Supervisor again, and actually got a person. She remembered talking to me earlier in the year (when I was trying to get Baguette’s pickup time changed because I refused to cut into her inadequate sleep even more by waking her up before 6:00 a.m.), confirmed a.m.-only pickup, and said that the only thing she could think of was that sometimes “when you make some changes, the system goes ahead and bumps kids off of routes when it’s not supposed to.”
You know what? That’s not a system.
But she did email the person in charge of routing and get them to reinstate Baguette’s transportation starting tomorrow, and she called me to let me know it was fixed.
So that’s good. But to get it fixed, I had to make multiple phone calls to multiple offices for a total of 45 minutes, be late to work, and find breakfast out in the world (thanks, McDonalds!) because I hadn’t been able to eat at home the way I usually do.
This is going to happen again, because this is how it “works.” Nothing’s ever easy, and it’s always something.
I love roasted vegetables. Love, love, love them. It’s not quite cool enough for that yet (although we did have a delightfully fall-like First Day of Fall). With temperatures in the 90s this week, I think I’d rather hold off.
But I do have a few fall dinner dishes that are easy to cook and don’t make me feel like I’ve heated up the entire house. Some of them are soups. There’s very little measuring in these recipes.
One of my standbys is black bean soup. I once had a co-worker who ate black bean soup every day. I’m not at that point, but I do like to have the ingredients for this one around: diced onion, diced carrots, a can of black beans, vegetable broth, and a variety of spices. I saute the onions and the carrots in olive oil, rinse and drain the black beans, saute them with the onion-carrot mixture, add the broth and some water, season, and simmer for at least an hour. Then I blend it with the immersion blender.
It’s not very photogenic, so there’s no photo. It is delicious, though.
A new introduction is corn chowder. This may sound like it should be a standby, but I haven’t made it regularly in the past. This month, though, I came up with a recipe that I love and can easily make after I get home from work. Saute onions and then carrots in olive oil, dice a couple of small potatoes and mix them in, add vegetable broth and water, simmer until the potatoes are done, lower the heat a bit and add frozen corn and some half-and-half, and continue cooking until those ingredients are heated through. Somehow this winds up tasting buttery. I don’t know exactly why, but it does, and I’m happy about it.
This next one I cook year-round. It makes me think of fall in the fall, but it is also a great summer recipe, so whatever. There is no sauce easier than Marcella Hazan’s Tomato Sauce. If you haven’t made it, you may be skeptical about it: A can of whole, peeled tomatoes; half a stick of butter; an onion sliced in half; a bit of salt. Remove the onion and blend the remainder. That’s it. You think it needs basil and oregano and pepper and more. It doesn’t. You just put this on top of pasta and eat. I’m not saying you’re going to replace your regular recipe with this one–but, actually, I did.
Oh, and one more thing. Read labels and buy the low-sodium version of everything. You can add your own salt.
Beyond these? I’ve got a whole Pinterest board of recipes I hope to actually try, whether or not it’s fall. Maybe someday.
I haven’t posted in a while. Or much this year at all. Turns out, life’s exhausting.
Baguette finished TK in June, and we promptly left for a week’s vacation in Santa Barbara. Where I drank a lot of coffee, we went to the zoo manymanymany times, and she lost a tooth! We don’t usually go that early, but it turned out that there was a week-long gap between the end of school and the start of summer camp.
Naturally, she was sick for the first few days of summer camp.
Then, after not-a-week of camp, she started summer school. This was by virtue of a revision to her IEP. In theory, fine. In practice? We weren’t so sure.
The challenge was that summer school only ran until about 12:45. That’s far short of the end of the workday. Neither of us works nearby, and it would be really hard to drop her off mid-day anyhow.
That meant Baguette would need to take the school bus from summer school to camp.
This was not her actual bus.
We had severe doubts about this. It just didn’t seem like something that would work. She’d never been on a bus of any kind, and she’d never been in a vehicle without one of us or a grandparent (and, let’s face it, that mostly means us).
The first couple of days were rough, as they worked out the details of the route. The ride was too long, and Baguette would arrive at camp screaming and crying. But she never balked at getting on the bus, and we started packing Dr. Seuss books so that she’d have some entertainment.
She decided she loved the bus. She started telling her aide that she wanted to ride the bus, long before it was time to leave for the day.
After four weeks, summer school was over, and it was back to all day at camp. No bus. Baguette was disappointed, but she rallied.
And after another three weeks, it was time to start kindergarten. So here we are, in kindergarten. We’re still trying to figure things out, primarily because there has been a lot of change–new special ed teacher, new principal, new classroom, and more.
This is Baguette’s first year in school, which means that we just had her first Spring Break. No, we did not take her to Mazatlan or South Padre Island or the Bahamas.
We went to Mammoth with some friends! There, we got to enjoy the cold weather.
And we also got to be cozy.
But why stop there? Why, indeed. Because this is possible in California–and because Mr. Sandwich had signed up for a half-Ironman triathlon–ten or so days later, we also went to Oceanside and Carlsbad.
Mr. Sandwich drove down early for registration, and Baguette and I took the train. She’s enjoying our train trips.
She also enjoyed the beach, as she always does.
And we got to cheer on our racer of choice!
Places to eat in Mammoth Burgers (amazing patty melt) CJ’s Grill (splurgy, but some of the best fish and chips I’ve had) Looney Bean Coffee Coffee! Shea Schats Bakery (the roast beef sandwich is basically a slab of prime rib with bread and condiments) Erick Schat’s Bakkery–Bishop (the lemon blueberry shortbread bites are amazing)
When Mr. Sandwich and I were married, but before we had Baguette, we made many pronouncements, as you do. Some of them still hold, like leaving the restaurant when we cannot keep her quiet and calm. Some of them remain untested (we are not fans of demanding MORE candy from people when trick-or-treating, and yes, we’ve seen that happen, but she’s not really a fan of trick-or-treating). Others have fallen by the wayside.
“No junk food before age 2! There is plenty of time to eat french fries later, but they don’t need them that young!”
At just under a year, Baguette reached up and pulled a french fry from Mr. Sandwich’s mouth and ate it. She loved it. Now I just wish she’d eat fries, because that would mean one more thing she eats.
“No TV before age 2!”
At about six months, she came home from day care with a fever. She felt awful and was exhausted, but could not quite tip over into sleep. I looked for something age-appropriate and stumbled across Yo Gabba Gabba. I thought, “Wow, this show is awful.” A minute later, she passed out on her own lap, and I thought, “This show is GREAT.” From there we found Pajanimals and Sesame Street (well, I knew about that one) and Wibbly Pig and Stella and Sam. We have never watched Yo Gabba Gabba again. That show is awful.
“We will never get a portable DVD player or own a car in which one is installed, even if we have to take a hammer to it. Our children can look out the window and play the Alphabet Game like we each did.”
We are seriously considering buying a portable DVD player for the car.
We were in a restaurant. It wasn’t Denny’s, but it wasn’t Ruth’s Chris, either–your standard American fare, in an attractive but not terribly trendy setting. It was late, particularly for Santa Barbara, which is a town that closes early.
It had been a big day. We’d taken Baguette on her first train ride, and had spent several hours at the beach (where a stranger had asked us to move our beach chairs and umbrellas because they blocked her open view of the water–from her third story condo). Baguette napped late, and had eaten, but Mr. Sandwich and I still needed dinner. I’d gotten her a new app on her iPad, and she was playing it happily and describing what was happening and what hat the monkey was wearing from one moment to the next.
Baguette likes her iPad on full volume. We tend to be immune to it, but we are aware of it in shared public spaces. We know it’s loud, but we also know what happens when we try to lower the volume. And she was talking, and happy, and we really hate to interrupt that when we don’t have to.
So when the woman at the booth next to us said, “Could you please turn the sound on that down?” Mr. Sandwich said, “I’m sorry. I’ll try, but she may scream,” and leaned across the table to try to make things a little more quiet.
As she turned away, she said something that I couldn’t quite make out, but I could see Mr. Sandwich’s face. It went a little feral, and he turned back to her and said something that is not our go-to approach.
“No, actually, that’s where autism comes in.”
We don’t hide Baguette’s diagnosis–we talk about it quite openly. It’s nothing to be ashamed of or embarrassed by. But we also don’t use it as a defense or a come-back. It’s an explanation, but not a justification. So I knew something had happened.
I managed to get Baguette to shift the iPad down to her lap, where the speakers were a little muffled. Mr. Sandwich and I had one of those wordless couple exchanges that meant that we would discuss it later, and we went back to eating our dinners. And while Baguette went back to talking about the monkey and its hats, we were silent. It was awkward.
Then the woman stood up, walked over, and faced me–carefully standing so that Mr. Sandwich could not make eye contact with her. She said, “Excuse me, have you ever considered treating your daughter with essential oils?”*
It was 9:40 p.m. I was exhausted. I didn’t know exactly what had transpired a couple of minutes before, but I was not so tired that I couldn’t tell that this woman was determined to make some kind of point. And I just didn’t want to talk about it. So I said, “I’m sorry, I’ve looked into essential oils as an autism treatment, and I don’t believe in them.”
She said, “But have you tried them?”
I said, “Excuse me?”
She said, “You said you’ve looked into them, but that doesn’t answer my question of whether you’ve tried them.”
So in rapid succession, we have:
Criticism of our child’s behavior
Criticism of our parenting (presumably, at this point)
Criticism of my thought process and word choice
This is when I got the expression that Mr. Sandwich describes as “a cross between a police bloodhound and a Stinger missile.”**
A series of responses flashed through my mind like slides in a carousel, and then one–informed by my time in the blogosphere–came into focus. I asked:
“Do you sell essential oils?”
And she saw fit to answer, “”Yes, I do sell them. I have a sample here, I can just wave it under your daughter’s nose and let her smell it, I think you’ll find it soothes her.”
Sure. Why not? I’ll just take some unlabeled vial of some poorly identified substance and wave it under my daughter’s nose.
But I didn’t say that. I said, “I’m sorry, but I’m not interested in giving her essential oils.”
And finally, she went back to her table. I don’t know if she could relax, but we couldn’t. Dinner was over, no matter what we had or hadn’t eaten.
It turned out that what she had said to Mr. Sandwich, when he said he would try to turn down the volume, was this:
Ah, well, that’s just where parental authority comes in, isn’t it?
No, lady. That’s where autism comes in. I think you missed the parental authority part; it happened when I said “no” to you multiple times, because Mr. Sandwich and I are the best judges of what Baguette needs or does not need.
*The correct answer: Yes, I have tried essential oils for a variety of purposes. I believe that they have some helpful properties. I also believe that their efficacy is limited. For example, I believe that lavender can be calming, and that it has some antibacterial properties. But I would not use it to treat pneumonia. And yes, I am aware that there is scientific research into essential oils and autism. I also know that the study in question uses essential oils as a sensory tool. In other words, it’s something for kids to smell, used in conjunction with other senses such as touch.
